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Conflicting Diagnosis/Opinions-help!

Discussion in 'Reactive Hypoglycemia' started by SugarTiger, May 2, 2016.

  1. SugarTiger

    SugarTiger Prefer not to say · Member

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    Hello one & all
    been a while since I posted, in and out of hospital and multimany outpatient tests chomping into my life & energy being the main reasons. Well I sadly hoped that would finally get diagnosis last friday, all this positive thinking i've been convincing my subconcious brain to do Must work eventually - but not yet apparently.
    In brief, lost so much weight due to eating difficulties I was eventually taken in as emergency to 'top' hospital, where was told stomach emptying too quickly & spasming, type of Dumping Syndrome not caused by gastric surgery. Now have NJ feeding tube for night feed to help with low bg in mornings. Had prolonged GTT 3ws ago & was told Hypoglaecemic as level fell to 1.8 and Insulin high, & told could ask GP for script for test strips to help monitor & 'prevent' hypos.
    Following week had 'mixed meal' test, (I have repeatedly told 'them' simple carbs cause the 'dumping' symptoms but was given a liquid 'meal' with soya so no wheat/maize starch) This unsurprisingly didn't cause any big problems, but at time just thought they would weigh all results together. Friday, different doctor, was told, everythings 'fine', you're 'not diabetic yet', and hinting yet again that CBT would help me(!), obviously because I won't eat simple carbs that cause my symptoms, so therefore I am causing the hypos?!
    Is BG 1.8 ever normal? I know they were looking at Insulinoma (overheard, not said to my face) but after mixed meal test they put brakes on everything & seem to be throwing towel in, I was told 'you can come back in 6 months if you want'.
    Any thoughts/advice? I'm really struggling to find the fight to keep going . Tricia
     
  2. Arab Horse

    Arab Horse Type 2 · Well-Known Member

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    Soory, no help whatsoever but just rffffffffffffffffffffffffffffff
     
  3. Arab Horse

    Arab Horse Type 2 · Well-Known Member

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    Sorry, enthuiastic cat couldn't wait for me to finish typing so added her comment and sent it!!!!

    Was going to say just wanted ro send some support and hope you manage to get something sorted out as hypos aren't good.
     
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  4. lindisfel

    lindisfel · Well-Known Member

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    Hi Tricia, Sorry to hear of your problems. Nosher and Brunneria will be along soon to help you. You need to keep testing and and logging what appear to cause your highs and lows. Probably test in the night as well to make sure you are not going low. It would not be surprising if you had high insulin if you had lows! If these occur after refined carbs the reason is obvious. Check you BG after having carbs at regular interval over a period perhaps of 4 hours + after eating and see where you go high and low. Marshal all your facts together and go back to your GP and explain and ask for a second opinion with another endo. It is your life and we often have to push doors open. If they think you could have am insulinoma they should give you a scan. If your weight is lower than it should be perhaps very small and frequents meals with complex carbs may help increase your weight. regards
    Derek












     
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    #4 lindisfel, May 2, 2016 at 10:35 AM
    Last edited by a moderator: May 2, 2016
  5. Brunneria

    Brunneria Other · Guru
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    Hi @SugarTiger

    So sorry to hear this!
    Was hoping that your testing would shed further light.

    Just to be clear - have they confirmed that you do NOT have insulinoma?
    Cos that really is important that you get that clear!

    And no, in no normal universe is 1.8 mmol/l acceptable.

    How well can you control it by diet alone?

    If is there any chance that you could afford to self fund a Freestyle Libre? I have found it both fascinating and incredibly helpful in mapping out exactly what MY body does in response to the foods that I put in it.

    Here is a link to the product
    http://www.freestylelibre.co.uk/
    and here is a link to my thread on the subject.
    http://www.diabetes.co.uk/forum/thr...aching-me-sooo-much-about-my-t2-and-rh.89347/

    My thinking on this is that the libre would provide you with graphs and print outs that you can email to your health team saying LOOK this is what happens after x food. And THIS is what happens after y food (you numbskulls).
     
  6. SugarTiger

    SugarTiger Prefer not to say · Member

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    Thanks Derek, I can't test at night as I have NJ feed going in Because I was getting worst symptoms in early morning, so it was decided I need to 'sipplement feed' whilst sleeping, I was having lot of problems getting to sleep & bring startled awake with racing heart, sweating etc (they don't seem to tie all the clues together ) & they 'sited' tube in small bowel so feed didn't go into stomach due to symptoms! Also, first type of feed they gave caused gut pain & more (it had maize in) & stuff i'm on now doesn't and has no wheat/maize just soya! We are currently pulling together reasons why I'm not happy to be left like this-the NJ tube will have to be removed eventually (& i've already had a blocked one and kinked one ) it's not the answer it's a plaster
     
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  7. SugarTiger

    SugarTiger Prefer not to say · Member

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    Thank you B
    the second doctor seemed to be working on the mixed meal results, & seemed to be saying given past history of being overweight, borderline bg problems (that no GPs flagged up, even tho my Dad was Type2!) it was just matter of time before I became diabetic-i'm so confused! Why do mixed meal without any substsnce that I keep saying causes problems I cut simple carbs out of diet months ago as pinned down had more problems when I included them, upped my protein & fat (bit of prob as had gallbladder removed so not too much extra fat), substituted chickpea and soya flour to try & make wraps etc to replace bread type food option - it's hard, but I have always trued to help myself foodwise since this started. I eill look into the Freestyle, I have had a Biosensor Codefree almost from start of this (3+yrs now) & it has helped me alleviate my symptoms numerous times. I've noted what I eat etc for some time, & have shown specialist gastro (who suspected 'Dumping Syndrome' & told me it Wasn't in my head, but now says I need CBT ) Why would a 50+ woman who loves toast & marmite & being half Irish was almost weaned on potatoes suddenly decided thry were the food of Satan?
    Thanks for your advice, I will peruse it now
     
  8. lindisfel

    lindisfel · Well-Known Member

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    I read from that Tricia you have not seen an Endocrinologist? regards D.
     
  9. SugarTiger

    SugarTiger Prefer not to say · Member

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    Believe it ir not Lindisfel (are you from Wonderful Northumberland?) both the doctor who told me I have Hypoglycemia and the one who said 'you can come back if you want' are Endocrinologists! I know it's '2nd opinion time' but if you knew the fight i've had with my GP Surgery to get this far you'd understand the 'defeated' air I am currentky wearing
     
  10. SugarTiger

    SugarTiger Prefer not to say · Member

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    Ps, apologies all for spelling etc, i'm a Secretary by trade and can't for life of me type 'straight' one-fingered as required by iPad!
     
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  11. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Having read through your posts, you certainly do know what foods are causing your hypos, and even if you do not know the cause, keeping yourself as well as possible is your main goal.

    Yes, I think that it is time to get another opinion, another endocrinologist who knows how to get a true diagnosis of what is happening to you.
    I have a wonderful endo in Manchester, @Linagirl has him as well.

    Believe it or not some foods are poisonous, especially potatoes!
    They do seem to cause some dieticians some obvious discomfort especially when you say to them, I wouldn't touch them with a barge pole now!
    If you know what foods you're body can't tolerate why do the doctors say eat them?

    We are not normal, we are weird! So why do we have to eat normal?
    Eating weird and not having poisons (for us (carbs) weirdos) is how we relieve our bodies of the hyperinsulinaemia (excess insulin) that causes our hypos!
    And all the nasty symptoms that it causes if not in control!

    One thing I learned from all my prolonged oral glucose tests is that if you spike, you hypo! If you don't spike, the excess insulin is not necessary and you don't spike, ergo no hypo!
    That is logical and my endocrinologist agrees, though he says very little carbs are important, don't know why, but I'm not a doctor, I'm only a RH er, who knows what has given me my life back. I'm fit and healthy and working full time and not going anywhere anytime soon. Looking not to retire or give up my great life!

    I have battled for over a decade with doctors to get someone who recognised my condition, it is no surprise to me that these things take time, Specialist endocrinologists are thin on the ground concerning blood glucose disorders.

    You just have to grind and battle and do the things that work for you!
    Never give up, always try to be positive, you can learn so much from your experience.
    And we would appreciate your views on our little weirdo community!
     
  12. SugarTiger

    SugarTiger Prefer not to say · Member

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    Thank you Nosher, for the encouraging words, when I have explained my food choices to 3 dieticians (including a diabetic dietician, she was a great help to me) & my nutritional enteral nurse they all say it's common sense, self preservation to avoid foods you know make you ill, shame those who could help are 'deaf'. I am gurding(!) my loins & preparing letters for the Endos, my specialist gastroenterologist (I have Hypermobility Syndrome that can affect your gut) and my GP. My gastro internally referred me to 'their' endocrine department, I have since learned Royal Free is centre of excellence for endocrinology down here, but will do bit of research to make sure I get better 2nd chance!
    Through my Hypermobility I have found that fellow 'sufferers' are the best source of good information and support, no-one understands your 'pain' like a fellow system fighter.
    Thank you everyone who's replied, I have consistently found a lot of support and info on here & Diabetes uk website
     
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  13. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    Even some specialist endocrinologists are not specifically specialist in blood glucose disorders because us weirdos are quite rare and unique.
    I learned most of the dietary stuff on this forum and from my research, simply because I hadn't heard or come across anything quite like RH before and neither had my GP(s)!
    My endocrinologist always had to make certain of what my symptoms were telling him and of course my test results, he only had one other RH er at that time.
    He has said that the professor he was tutored by would never diagnose RH, as he thought it couldn't possibly exist!
    Go figure!
     
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  14. lindisfel

    lindisfel · Well-Known Member

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    If you are eating legumes Tricia your diet is not without complex carbs even if they also have a lot of protein. I live in Cumbria but we often go to our twin county on the east coast. Did you see the Robson Green programs? Northumberland has incredible beaches but the sea is cold. :) regards Derek
     
  15. Lamont D

    Lamont D Reactive hypoglycemia · Master

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    When does this country get warm, especially up north?
     
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  16. SugarTiger

    SugarTiger Prefer not to say · Member

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    I
    I have added chickpea and soyabean flour to my diet, making wraps & pancakes, good for slower release.
    We always shout 'don't tell everyone' at the tv when Robson Green tells everyone how fantastic Northumberland is, we have been visiting for past 15yrs & are getting sorted to move up there for good within a year, all going to plan! Thought perhaps you were a Lindisfarne lad Derek?
     
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